For reasons simultaneously mundane and complicated, I find myself traveling a lot. The distance affords me both time for reflection and a tremendous amount of opportunities to forget the various pills and accessories that keep me alive. Although I have a 94.2% hit rate, that ain’t 100%, so here’s a list of the things I could forget, tiered by how much it sucks when I forget them

Tier 1 – Over the Counter

Pepcid (acid reducer), Claritin (allergies), Flonase (allergies and nasal polyps), Vitamins

The penalty for forgetting any of these is taking $10 to Wal-Mart and buying enough to get through the weekend. I have them listed from most important to least important above, with Pepcid topping the list because it’s actually a drug one of my other drugs takes. Also, I listed them with brand names to save everyone some Googling, but I’ll be goddamned if I’m paying double for top of the line over the counter drugs.

I have to take special vitamins as well, which technically have to be mail ordered, but I can get by for a few days on some whack ass Centrums if I really have to.

Tier 2 – Quality of Life Prescriptions

Albuterol (fast acting bronchodilator), Stiolto (long acting bronchodilator), Zithromax (maintenance antibiotic), Losartan/Hydrochlorothiazide (blood pressure reducer), Inhaled Saline Solution (mucus seasoner)

I can go a couple of days without these, but depending on the weather and my health, they may not be very fun days. Albuterol is the opening act of my daily treatments, both in that it’s the one I do first and it opens up my airways. Stiolto is also a bronchodilator, but acts long term as opposed to the quick hit of the albuterol. As such, it takes a couple of days without Stiolto before I start to think “oh yeah, I guess that was doing something”. Losartan/Hydrochlorothiazide is for my blood pressure. I haven’t missed it yet, but I imagine it’s not pleasant. Zithromax is a prescription I imagine a lot of you out there have sampled, but I take it every Monday/Wednesday/Friday to either inhibit bacteria growth or make superbugs, I don’t know. Either way, they keep giving ‘em and I keep taking ‘em. The saline solution goes in a nebulizer to salt up my mucus for easy removal. I can miss about a day of that before things start to feel a little tight.

With the exception of the Stiolto, I could afford to fill these prescriptions without insurance, though I wouldn’t be happy about it.

Tier 3 – Accessories

Monarch Vest and Power Supply (mucus shaker), Nebulizer, Air Compressor

The Monarch Vest is pretty much a $10,000 Brookstone massager. It’s supposed to shake my bronchial tree and loosen up the mucus so I can cough it out. It works fine, though we all pretend it works great because it’s more convenient than the previous version of The Vest. I rarely forget the vest, but I have forgotten the proprietary power supply. It has a battery, but I have to use it twice a day for 30 minutes at a time and the battery will only last about 3 and a half sessions. After that it’s just a 22 pound fashion statement. Luckily, it’s function can be replicated by getting someone to drum on my ribcage for a little bit.

The nebulizer and air compressor are necessary for both the saline I talked about above and another important inhaled drug that’s coming up. You’d think one would be able to stroll up to the drug store and purchase either one of these on a whim, but it’s actually surprisingly complicated, as both need a prescription. There are some websites out there that will sell you both on the honor system, but I’m not going to out any of them here. But alas, even express delivery isn’t super helpful if you need the parts right fucking now. In light of these developments, I own a backup compressor and many backup nebulizers.

Tier 4 – Diabetes Drugs and Supplies

Continuous Glucose Monitor (blood sugar meter), Novolog (short acting insulin), Basaglar (long acting insulin), Pen Needles (stabbing)

Novolog is a short acting insulin, so I need that to eat anything with carbs and basaglar is a long acting insulin, which essentially acts as a support for the Novolog. If I forget either one of these I can just stop eating carbs or try to cut a deal with a local diabetic, which is somehow easier than getting refills at a pharmacy I don’t usually use. The pen needles are used to get the insulin into my body. Apparently these are available over the counter now, which is nice, because while I can stretch the supply, I really do love a fresh needle.

The continuous glucose monitor holds the title of “thing I’m most likely to forget” because I have to change it every 10 days and it’s somehow always a surprise to me when it expires. I do have an over the counter finger prick meter I bought for those times when my calendar calculations are a little off, but if there’s one thing 10 straight days of pure blood glucose data has taught me, it’s that a one time reading is essentially useless. I’d love to sit here and tell you I’m willing to prick my finger every half hour to keep up, but it wouldn’t be long before I switched to an all Slim Jim diet or used the “well, I’m still upright” model of glucose monitoring. Neither comes recommended.

Tier 5 – The “Gotta Eat” Tier

ZenPep (digestive enzymes)

This one gets it’s own tier because without my digestive enzymes, eating is just the process of chewing things up so they’re easier to pass an hour later. That’s an exaggeration; it’s actually about 24 hours before things literally go south. It always seems these wings of wax are going to hold out, then the sun rises and I start blowing my hole out.

A few years back my stepsister got married in Vegas. It was a big family trip, so we had a big family meal at the airport Hooters the night before we left. I forgot my enzymes back in the hotel and didn’t feel like asking a van full of people to turn around. I figured I could just take them afterwards and be fine. And I was, right up until I was flop sweating on a 5 hour plane ride. I held out for about three hours, but when I finally did my business, it looked like someone shot the bowl with a paintball gun. For the next 4 days, everything I ate flew right out, regardless of enzyme consumption.

However, the “joy” of digestive enzymes is that enough people take them that after some negotiation, it’s possible to get someone to call in a few days worth to a pharmacy. It’s not cheap—they’re about $15 a pill and I take 6 per meal—but at least it’s possible. There are generic enzymes too, but those are just as good as taking nothing, even if the last time I had them they came in a blood red capsule that was stylish if not effective.

Also, these are the pills that I have to take Pepcid for, otherwise my stomach acid tears them up too fast.

Tier 6 – The Turn Around Tier

Pulmozyme (inhaled mucus thinner), Trikafta (protein modulator)

This is the turn around tier, because if I forget one of these, I’m just going back home.

Pulmozyme is an inhaled medication that splits the DNA strands of my mucus and thins it out a bit, making it all easier to bring up and pass. It has a special place in my heart because for years a one month supply was the most expensive thing I’d ever bought. The full story is in my book, but my state insurance lapsed, I couldn’t get pulmozyme, started coughing up blood after a week, and had to convince the pharmacist to let me charge it for $1,900. I paid $400 more than the insurance company because my negotiation skills are poor, I guess.

However, as nostalgic as I am for those blood spewing days of making it rain at the pharmacy, things have changed since then. For one, spending 4 figures on a drug is no longer a novel experience. Every January I get to start off the new year with a cool $1,400 copay before embarking on a journey of $4k in total out of pocket expenses. And my insurance is actually one of the better plans!

But there’s also a new top drug in town. Trikafta moves and unfolds the misplaced and messy cystic fibrosis transmembrane conductance regulator protein in my cells which helps water and salt move more normally through the cell. That means my mucus can no longer caulk a bathtub. I’m also at—or slightly above, depending on your perspective—a healthy weight for the first time in my adult life. It’s not a cure and it hasn’t lessened the number of prescriptions I’m on, but it has made CF a lot easier to manage.

Trikafta is a tremendous life changing achievement. I need to reiterate it’s not a cure as, in the words of Warren Zevon, “My Shit’s Fucked Up” and I’ve had CF long enough that a full cure is probably out of reach for me. But it has absolutely changed my life and the lives of many others for the better in a lot of ways. That makes it difficult to talk shit on it. Or at least it seems to make it difficult for most people. I’m a natural born hater. I was born to pass mucus and talk shit, and thanks to Trikafta, I’m all out of mucus.

Trikafta is fucking expensive. I’m sure it was expensive to develop, even with the $40 million that Vertex Pharmaceuticals (then known as Aurora Biosciences) got from the Cystic Fibrosis Foundation, but here is a study that estimates the manufacturing costs at less than $6,000. Looking at the last Vertex quarterly report, we can see they made a cool $915m in profit in the second quarter of the year alone. The current yearly price that shows up on my pharmacy receipts is $306,816, which makes me about .003% of their quarterly revenue before costs. Neat!

It used to be less, but they actually upped the list price after a couple of years on the market, which is quite a move if you can pull it off. I, of course, do not pay that price directly, my copays come out to about $720 a year for it. Funny enough, while I was writing this, I got a call from their patient assistance program and they were finally able to get my pharmacy to use a copay assistance card, which is something I’ve been trying to do for years. I have a lot of negative opinions about the impact of high drug prices, but at least Vertex’s customer service is tremendous. First time in my life I’ve felt like a high roller.

But that’s not the point of this. The point of this is that I forgot my Trikafta this weekend and had to turn my ass around. It comes in 7 day packs and after 3 years and a few missed doses, my 7 day cycle now starts on Saturday, so if I’m packing on a Friday night, I have to remember to throw the new pack in my medicine bag. Given that one day’s dose would be just a little less than if I bought 2 PS5s, I can’t solve this one by swiping the plastic. Of course, most pharmacies don’t stock it anyway and even if they did, it’s not like they’d break up a pack and sell me a couple of looseys. Or maybe they would, I don’t know. It seems like an expensive pain in the ass, so I just turned around.

Of the various wounds inflicted by the current prescription market, changing travel plans is a mere paper cut compared to the gaping wound of the 18 million Americans that can’t afford their prescribed medications but like a paper cut, it sure is annoying.

Things I Like

Speaking of genetic mutations, I loved the new Ninja Turtles movie. I was a big fan when I was younger, though it’s not necessarily something that’s stuck with me as I’ve gotten older, even if I did manage to buy all the Ninja Turtles as Universal Monsters figures that came out last year and I play more TMNT video games than the average 40 year old (maybe?). In any case, I think TMNT: Mutant Mayhem is about as good of a franchise update as I’ve ever seen, making some smart story adjustments and presenting a mostly fresh version of a thing that’s older than the intended audience.